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Sunday, May 1, 2011

Is different wrong?

"When I was four years old they tried to test my IQ, they showed me this picture of three oranges and a pear. They asked me which one is different and does not belong, they taught me different was wrong." ~Ani Difranco

The left side of my face was paralyzed 100% as a result of surgery in 1979. I have recovered a lot of usage but that side of my face definitely looks different than the other side.

Guess I need to give some backstory before I refer back to the quote.

Dr. Peter Jannetta is a major name in neurosurgery. He had perfected a procedure for trigeminal neuralgia called a microvascular decompression procedure (MVD)commonly referred to as a 'Jannetta Procedure'.

That January an unsuccessful procedure was tried that did not help my pain; and added it in the lower part of my face where it had never been, as well as caused the loss of sensation to my left eye, face, mouth and tongue. Because the pain was unhelped, my doctors suggested I see Dr. Jannetta.

I had to decide if I wanted the surgery he offered. I had just been very harmed only 3 months earlier. I was worried about my face. I wanted to be an actress, hope still springing eternal. I had not been told when I had the last procedure that I could lose sensation in my mouth and tongue or have added pain. I did not want there to be any surprises this time.

"Dr. Jannetta, can my face be hurt in any way?" "No." he assured me. "I promise you your face cannot be injured." His resident answered the same way when I asked him in a separate discussion.

The surgery was over. I opened my eyes. As I did I noticed my mother's expression changed. It went from the "Hello." look people have when you wake up to one scared and upset. "Nurse. Nurse." My father did not wait for one to come over. He hurried away from my bed and grabbed the arm of the first nurse he saw. To my amazement, the nurse did not look much better as she looked down at me. "Carol, let me see you smile." She looked. "I'll get Dr. Jannetta." she said and hurried away.

He came over to my bedside. He rubbed his fingers together close to my ear. "Can you hear this?" "Yes." I said. Then he left. Still no one said anything to me about what was wrong and why there was so much concern and upset surrounding my condition.

My face was paralyzed. I was now upset but no one was making any suggestions on how to fix it. No physical therapy, no discussion on how it would get better. No discussion even if it would get better.

Dr. Jannetta left for Germany the afternoon of the operation. The few seconds in the NICU was the last I saw of him until weeks later at a follow up office appointment.

In the interim, my left eye, which had lost all feeling as a result of the prior procedure (that was a known complication) and, now unable to close, became so dried out it was at risk needed to be protected. The only way to do that was to sew it closed.

I looked horrendous. The ophthalmologist wanted to keep it closed permanently. I refused. It is open (but does dry out and has required a few more forced closings over the years) but definitely looks different from the other one. The one side of my face ages, the other does so much more slowly. The smile is somewhat lopsided. There is a difference that I think most people once they know me get used to but new people notice. Some times I am asked "Did you have a stroke?"

This takes me back to the quote. (Let me remind you cause it has been a lot of paragraphs in between. "When I was four years old they tried to test my IQ, they showed me this picture of three oranges and a pear. They asked me which one is different and does not belong, they taught me different was wrong." ~Ani Difranco)

Different is wrong. It is not just different. People treat you strangely. They do things they would not otherwise do, somehow thinking that if you look unlike a 'normal' person you do not have the same feelings.

There are nice folk as well as thoughtless ones. The latter stare, the eye the most quickly noticable. They give a nudge to their child when he (she) starts to ask me "What happened to your eye?" (That is a standard kid question. I do not mind it, in fact I welcome it. Much, much better than a stare or a sidelong, long glance.) "Leave her alone. Don't ask her that!" they say teaching the child it is wrong to be different, someone not to be approached.

The nice ones offer me a tissue. I have to lubricate my eye throughhout the day. To some it seems like tears or tearing. (I had a guy once when I lived in NYC, become very concerned. He was standing on the stairs in the subway. As each person passed he said "F^&%& you, F^&&& you." He started to say it to me, stopped and instead followed me down the stairs. "Are you allright? Don't cry. Are you allright?" "I'm okay. Really. My eye is infected, that's all." It was the standard answer I gave, the truth way too long and involved a story. "Are you sure? Are you sure?" Finally I convinced him all was well. "Okay, then." he said. I heard him as he walked back up the stairs, talking at the people coming down them. "F&*** you. F^&&& you.") One lady insisted on helping me out of the subway car, deciding, for some reason, that I must be blind. "Don't worry, dear. Just take my arm." I did not know how to nicely say I was not blind so I let her escort me onto the platform. Other folks share their remedies with them, bonding with me by assuming a similar eye issue. "My doctor gives me this antibiotic when my eye tears like that. Make sure your doc gives it to you if he isn't." "I had Pink Eye too, don't let your kids touch your eye but you'll be over it soon. I was." They are being nice. I always take it with a grain of salt and a little smile. They want to help.

I think maybe the 'different' is one of the reasons, proabably low on the list but there, that I try and keep the pain to myself. I say "Help me. or "Please." when the pain gets bad, but I say it sotto voce, as quiet as I can, the words said outloud in spite of my trying to not speak the pain. The answer to "Are you Okay?" when I am not a "I'm fine, thanks." I want to be you. I want to be the guy who is fine. Who does not have pain. Who is not disabled and afflicted.

Three oranges and a pear. One of these things is not like the other, one of these things is not the same. I hate being the pear. I want to be an orange.

4 comments:

I know I can't say anything to make you feel better so I won't. I will only say that no one alive is normal or without heartache. Why do some of the most successful people committ suicide?You are a child of God and He loves you very much. He promised that we would have trouble in this world but he has overcome the world.My hope is in my eternal home with Him. You may accept or reject that but I am going to pray for you every day from now on. I'm leaving a link of a book I reviewed. Please take the time to read it and God bless.http://sharonhenning.blogspot.com/2011/03/book-review-for-life-in-spite-of-me.html

22 years ago I came down with a case of Belle's Palsy. It is a virus which attacks the nerves which control the movement on the whole side of one's face. I became the pear. I had to tape my eye shut because it would drift open during the night. It was complete paralysis of the left side of my face. Luckily, it got better after 9 months. It did leave me with some minor paralysis, but I am happy for what I recovered.

The 9 months with Palsy changed my life. I walked in the shoes of "the pears". My occupation was in retail sales, so you can imagine the reactions I got from customers. Not good.

Although I did not experience any pain with my condition, the heartach and misery only compounded each and every time I looked into the mirror. I hated the deformed person looking back at me. What had they done with "me"? Well, they certainly changed me.

I now have a distributorship which sells a pain relief product. I have dedicated my life to helping people in pain. This is not a sales pitch and I do not think our device would help you. It regenerates cells in soft tissue problems. I just wanted to tell you that I am reading your blog and I can clearly hear you. You keep writing... I'll keep reading. And, with time...things will change. One thing I have learned, "the only thing constant in life, is change."

Barry, Thank you for sharing that with me. When the paralysis was at its worst, and sometimes even now, looking in the mirror is difficult. I remember being in a store one day. A woman walked past me who apparently had a stroke. (Her arm was also paralyzed.) My stomach just somersaulted seeing her face. She was my mirror and I could not stand it. You were so very brave to fight on with retail. Some people forget it could happen to them; and do not think that we actually have feelings. That's wonderful that you are working to help folks in pain.I am so glad you are reading and that it resonates with you.The change idea is definitely one we both have seen, very clearly, in our own lives when we did 'lose' our face.Thanks Barry.